Tuesday, April 29, 2008

RDI Is NOT an Evidence Based Intervention

In New Brunswick several years ago there was little in the way of autism specific services. An interdepartmental committee comprised of representatives of the Departments of Family and Community Services (Now called Social Development), Education and Health, the "IDC", some autism "community" representatives and some professionals met for 18 months before issuing a report which stated that obvious fact. The failure of the IDC Committee, publicly at least, to discuss the need for autism treatments and to identify treatments that should be offered to autistic children in New Brunswick, is what prompted me to become publicly involved in autism advocacy in New Brunswick. One positive development that came out of the IDC review though was a commitment by the New Brunswick government to evidence based treatments.

That commitment to evidence based interventions is of critical importance for New Brunswick's autistic children and youth and has been largely honored since then by the Province of New Brunswick. There is, however, despite the existence of a high quality autism intervention training program at UNB, persistent pressure from some pockets, particularly in the Saint John and St. Andrews areas, to employ non-evidence based interventions with autistic pre-schoolers and students. In Saint John in particular, the "anything but ABA" sentiments of some influential people in the autism "community" have resulted in negative and inaccurate perceptions of ABA amongst some parents busy with the demands of child raising, dealing with their children's autism and, like all of us, struggling to get by. At the same time the "anything but ABA" group tends to promote any intervention with a nice sounding name that looks fun on its face, anything as long as it is not ABA.

The intervention which is currently in vogue amongst New Brunswick's "anything but ABA" lobby is RDI. RDI sounds so nice - Relationship Development Intervention. After all how can one possibly be against "Relationship Development"? And it is an "Intervention"! It sounds so professional it must be evidence based right? Well no, not really.

One of the leading reviews of the evidence basis of the effectiveness of autism interventions is the MADSEC Autism Task Force Report which reviewed the professional literature in 1999-2000 and concluded at pages 60-61:

Based upon a thorough examination of numerous methodologies considered as interventionsfor children with autism, the MADSEC Autism Task Force has characterized the interventionsreviewed as follows:

• Substantiated as effective, based upon the scope and quality of research:Applied behavior analysis. In addition, applied behavior analysis’ evaluative procedures are effective not only with behaviorally-based interventions, but also for the systematicevaluation of the efficacy of any intervention intended to affect individual learning andbehavior. ABA’s emphasis on functional assessment and positive behavioral support willhelp meet heightened standards of IDEA ‘97. Its emphasis on measurable goals and reliabledata collection will substantiate the child’s progress in the event of due process.

• Shows promise,but is not yet objectively substantiated as effective for individuals with autism using controlled studies and subject to the rigors of good science:Auditory Integration Training, The Miller Method, Sensory Integration, and TEACCH.• Repeatedly subjected to the rigors of science, which leads numerous researchers to conclude the intervention is not effective, may be harmful, or may lead to unintended consequences:Facilitated Communication.

There is no mention of RDI in the 1999-2000 MADSEC review but RDI has emerged more prominently since then in autism workshops offered in New Brunswick and elsewhere and there has been another important and more recent review of the scientific studies of the effectiveness of autism interventions - the American Academy of Pediatrics report Management of Children With Autism Spectrum Disorderspublished online October 29, 2007. The AAP concluded, at page 1165m with respect to the evidence basis of RDI that:

RDI focuses on activities that elicit interactive behaviors with the goal of engaging the child in a social relationship so that he or she discovers the value of positive interpersonal activity and becomes more motivated to learn the skills necessary to sustain these relationships.56 Some reviewers have praised the face validity of this model, which targets the core impairmentin social reciprocity. However, the evidence of efficacy of RDI is anecdotal; published empirical scientific research is lacking at this time.

(Bold highlighting added for emphasis -HLD)

If a reader wants to understand how weak the evidence in support of RDI effectiveness is, as summarized by the AAP above, they can compare it to the AAP summary, at page 1164, of the evidence in support of effectiveness of ABA:The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes havebeen significantly better than those of children in control groups.31–40

When the New Brunswick government committed to evidence based approaches to treating and educating autistic children it adopted a very sound policy which has helped many autistic children. Even in Saint John where the "anything but ABA" sentiment has been strongest, autistic children receive evidence based intervention at the Stepping Stones autism agency. But why is it important to provide evidence based interventions?

In Children with autism deserve evidence-based intervention, The evidence for behavioural therapy, MJA 2003; 178 (9): 424-425, Jennifer J Couper and Amanda J Sampson, reviewed some of the evidence in support of the efficacy of behavioral interventions for autism. The authors stressed the importance of an evidence based approach to autism interventions:While ineffective therapies may be harmless, they waste parents' money and the child's valuable therapy time. Furthermore, the delay in implementing effective treatment may compromise the child's outcome.

The choice of autism interventions offered by New Brunswick autism agencies should be determined by the evidence basis in support of their effectiveness. Failure to provide evidence based effective autism interventions may compromise the outcome for children with autism disorders in New Brunswick.

22 comments:

Sharon Kincade
said...

Hi Harold,I find it interesting that you quote “influential people in the autism community in Saint John” as having “anything but ABA” sentiments. Being a Saint Johner involved in the autism arena, I have NEVER heard such a sentiment expressed or even implied. I’m just wondering where this impression is coming from?Sincerely,Sharon Kincade

You may be interested to know that an evaluation of the RDI program has been published in the prestigious, peer-reviewed journal, "Autism." The article appears in the September, 2007 issue.

Full reference: Gutstein, S., Burgess, A. and Montfort, K. (2007). Evaluation of the Relationship Development Intervention Program. Autism, 11, 397-412. (Sage Publications). The article is also available online:

http://aut.sagepub.com/cgi/content/abstract/11/5

It's also important to note that evidence-based interventions aren't necessarily the best interventions. "Evidence-based" means just that: there's evidence for a certain degree of effectiveness.

Other interventions, whether currently evidence-based, or not yet evidence-based, may be inherently better, worse, or similar.

You do a disservice by bashing a program without providing the most current information available about that program.

Thank you for visiting my blog site. Perhaps you can post a link to it on the CACI board so that parents there can have direct access to a site promoting evidence based intervention.

I am surprised that you would take issue with my characterization of the Saint John autism community as being an "anything but ABA" area. In all honesty I do not find your denial credible. You yourself have been very involved historically in resisting efforts by parents from across New Brunswick to obtain government funded ABA services for their children. You and others associated with the CACI in SJ have actively lobbied against the provision of ABA services for autistic children. In fairness though the SJ parents of children attending the Stepping Stone agency probably do not share your outlook about ABA at least once their children actually receive the benefits of ABA.

Recently in a meeting requested with the Dept of Education by ASNB to discuss autism issues the Dept officials saw fit to invite CACI which did not attend and NBACL who was represented by David Jory who I believe is from SJ. Mr. Jory somewhat shockingly referred to ASNB and our efforts to provide ABA to autistic children in need in school as "fascist". Dawn Bowie was also present as was Shelly Pimlott for the Dept of Education.

On the Saint John based CACI web site message board you still post a 2005 letter written by A Olsen a Saint Johner, also actively involved with CACI which refers to NB ABA advocates as "moaners". This is a letter that was sent to Provincial cabinet ministers:

"Dear Honourable Ministers, I am composing this email, after much thought and consideration. My name is Angela Olsen, and I have written to this government on a few occasions, always involving my son, Matthew Olsen. Matthew is a beautiful, smart and amazing little 8 year old who attends Glen Falls Elementary School here in Saint John. Matthew just happens to have Autism Spectrum Disorder (ASD). Now, before someone rolls their eyes and presses delete, I am not writing to moan about Applied Behavior Analysis (ABA) in schools or private funding for it in my home. I do not want ABA, nor would I accept him receiving ABA in his classroom.I am writing to you now, with another concern. Matthew has been seen by doctors, speech therapists, psychologists, and they all say the same thing; Matthew needs more Speech Therapy. He also needs Occupational Therapy(OT), as he has extreme sensory issues. He was placed into a special needs class because his behaviors were "off sync" in the regular classroom. He is functioning at a high cognitive level, but his speech is very low. This causes aggression and screaming, as he cannot get the words out. He can speak, very well in fact, but he does not at school. My question is this, Why isn't the Extra Mural Speech Language Pathologist (SLP) seeing him? I wrote to the school on many occasions regarding this only to be told that the SLP is overwhelmed with students. Ok, so what does that have to do with MY son? He is considered non verbal, is this not reason enough? I realize it is not the schools fault nor his teachers, they are just the messenger. So, I deal with it, life goes on. I am also now informed that the Extra Mural OT, does not work with the children in school, but just tells the teachers to "take him for a walk" or gives them weighted snakes for the kids to put on their shoulders! Ok, correct me if I am wrong, but isn't Extra Mural supposed to work with the kids?? Teachers have it hard enough with the special needs of children like mine, they could certainly use a hand in teaching them. I am not 'bashing' these therapists, I would certainly not want their case loads. They cannot do it alone, why are they expected to?? Why is this government so focused on ABA, when they should focus on Speech therapy and Occupational Therapy in the school system? Psychology would be a treat! Matthew has been on the waiting list for 4 years, and has yet to be seen!!! Is this acceptable?? When is the government going to wake up, and stop giving into the moaners about ABA?? Help our kids, they count too. Why is there only ONE SLP in all of East Saint John? She deals with Glen Falls, Forest Hills, Chanplain Heights, has the government not heard about the size of these schools?? Do you NOT know how many kids need Speech and OT??This is unbelievable! I shake my head at the ineffiency of this program. I realize these programs are expensive;however, I am sure putting these kids in institutions will be much more costly in the future. Matthew doesn't need someone trying to change him, or 'fix' him. He needs to be taught to speak, to cope and deal with his sensory issues. I do what I can at home, yet he spends a good portion of the day at school, where most of the issues are. I do not want someone sitting down with him, asking him to 'touch his head' and if he does he gets a cookie. No thanks, belittle his intelligence somewhere else. Matthew reads at a low Grade 2 level, has yet to make a mistake in Spelling and loves to do Math. He isn't stupid, and I'd not take it lightly for him to be treated as such. I invite the government to witness what is going on in school with kids who cannot talk, or who have sensory issues like Matthew does. I was told by an adult with Autism ( who is extremely high functioning) that the sensory issues Matthew is suffering is much like a toothache, put pressure on it, and it eases, well, Matthew feels this all over his body! Can you imagine what that must feel like?? I don't even want to know how it feels. Occupational Therapy would do wonders for this, and I know for 100% fact, Matthew is only one of many many children who suffer this sensory issue. Why is he being denied this therapy? If Matthew could speak better, he'd not be so frustrated, not scream out of upset caused by frustration, and maybe, he'd be able to spend more time in the regular classroom! Come on! Matthew doesnt need a damn cookie, I'll bake them at home!! He needs access to Speech and Occupational Therapy!! I do not know which would be worse, the government not knowing about the lacking services in Extra Mural Programs, or being aware yet doing nothing to solve this issue. I await your response to this serious issue.Sincerely,Angela OlsenSaint John, N.B."

Mr Jory's and Ms Olsen's comments are not isolated remarks about ABA and parents seeking ABA for their children. YOU yourself in a letter wrote a dismissive letter to the editor of the Telegraph Journal in which you mocked a rally we held as the efforts of six highly vocal families which was categorically false:

NB Telegraph-Journal | Readers' ForumAs published on page A7 on February 7, 2004

"Autism: a silent majority?

I couldn't help but notice a full page of Letters to the Editor' under theheadline, "Province's autistic community fights back" (Telegraph-Journal, Feb.4). Equally, I could not help but respond.

My first comment is that the views of six highly vocal families do notnecessarily represent the "province's autistic community" as a whole. In fact,there are some persons with autism (such as Michelle Dawson of Quebec) who arguethat the so-called stakeholders (including families) involved in the autism"fight" (as your paper describes it) do not represent autistic persons at all,but rather their own vested interests. Whether the vocal few represent thesilent majority could be a debate in itself."

Apart from personal attacks on parents advocating for ABA you and some others in SJ have tended to minimze ABA by continually painting it as "one option amongst many" without addressing the differences in the scope and quality of the evidence in support of ABA compared to all other autism interventions. If you think I am being inaccurate please say so and I will post some of the newsgroup comments and newspaper comments by you and Debbie McDonald also of SJ and the CACI. Over the years you have constantly portrayed ABA as only one option no better than all the others a view which has been repudiated repeatedly by organizations such as the US Surgeon General, state agencies in NY and California, the Association for Science in Autism Treatment, the MADSEC Autism Task Force and most recently the American Academy of Pediatrics.

On the CACI message board you posted both of the recent AAP autism reports, including the Management of Children with ASD report which evaluates various autism interventions. You placed a one paragraph excerpt from that report on your CACI message board as follows:

"Management of Children With Autism Spectrum Disorders

Scott M. Myers, MD, Chris Plauché Johnson, MD, MEd the Council on Children With Disabilities

ABSTRACT

Pediatricians have an important role not only in early recognition and evaluation of autism spectrum disorders but also in chronic management of these disorders. The primary goals of treatment are to maximize the child's ultimate functional independence and quality of life by minimizing the core autism spectrum disorder features, facilitating development and learning, promoting socialization, reducingmaladaptive behaviors, and educating and supporting families. To assist pediatricians in educating families and guiding them toward empirically supported interventions for their children, this report reviews the educational strategies and associated therapies that are the primary treatments for children with autism spectrum disorders. Optimization of health care is likely to have a positive effect on habilitative progress, functional outcome, and quality of life; therefore, important issues, such as management of associated medical problems, pharmacologic and nonpharmacologic intervention for challenging behaviors or coexisting mental health conditions, and use of complementary and alternative medical treatments, are also addressed.

What you didn't give your clients at the CACI was the very positive evaluation of ABA from that report which set out in my comment here. Nor did you point out the lack of evidence for RDI and some other interventions mentioned by the AAP.

On your message board, going back 2 years there is only one express reference to ABA. That came as the result of an express request by me that you post some of the positive expert findings about ABA from the Deskin Wyneberg decision on the CACI site. You refused my request.

I had also emailed you and Ms McDonald in the past about two complaints I had received from two former members of CACI who had never heard anything positive about ABA at the CACI in Saint John.

Anything but ABA? Here is the CACI message board for the past 3 years. Ttake out my request, and your response, and there is no express mention of ABA while "anything but ABA" is mentioned:

I stand by my comments about the Saint John autism community as a center of "anything but ABA" sentiment. It is my hope that as children in the Saint John area receive ABA intervention at the agency the CACI views will hold less sway in that area.

You seemed to skip over the reasons mentioned in my comment quoting Couper and Sampson about the reasons an evidence based approach is important. While a new, untested intervention may be effective it may not either and precious development time, money and hope can be squandered on a gamble.

As for the RDI evaluation you mention it was published before the AAP report which apparently wasn't swayed by that report in its assessment of RDI. Your comment also indicates that the evaluation was by three authors one of which was S.Gutstein. It appears then it was a self evaluation by someone with a proprietary interest in the promotion of RDI. Not exactly an independent objective evaluation.

First let me say, I do not speak in any way for Deb MacDonald or anyone else involved with the CACI.

I speak for myself only. I can however address your comments about the CACI website which I maintain as a volunteer. There are hundreds of websites devoted solely to ABA. Ours however, is devoted to providing parents with information, INCLUDING information on ABA. Your list of what is on the site is pretty impressive, yet you somehow missed the links posted to ABA sites, the article on the site explaining the basic principles of behavior modification (written by me), and a whole subsection on behavioral management strategies. There is a section devoted to BACB certified training programs and online ABA training. You also seemed to have missed our partial listing of in-centre books that includes: A Treasure Chest of Behavioral Strategies for Individuals with Autism, Positive Behavioral Support, A work in progress: Behavior Management Strategies, and Orchestrating Positive and Practical Behavior Plans. There are more not yet on the list as I add to it when I have time. In addition there is a link to the seminal 1987 Lovaas article available under the section called More Articles.

Thank you for your comments. And I do appreciate the courteous tone of your post.

But you did not respond to the long history of ant-ABA commentary and activity associated with SJ only some of which I have posted here.

I hope that CACI is today providing information about ABA such as that found in the AAP Management of Children with ABA report. And I hope that CACI is encouraging parents of newly diagnosed autistic children to get a referral to the Stepping Stones agency for intervention as early as possible. The children deserve it.

I came across this blog accidentally and felt compelled to leave my two cents. I am a speech-language pathologist and except to become a board certified behavior analyst within the next six months. I agree with the original post- RDI is not evidenced-based; however, that does not mean it should be discounted. ABA is important because the entire field is predicated upon science. Occupational therapy, often times, is not. I find that some speech pathologists embrace pseudo-science. In response to the mother who is upset that her child is not receiving more speech therapy at school- I'm not sure if this comes as upsetting or uplifting but- speech therapy in the schools is never ideal. The speech pathologists are typically wonderful but group based intervention for non-verbal children is typically ineffective. Also, remember- autism is a LANGUAGE disorder- not a SPEECH disorder. Parents often think that their children understand significantly more than they do in reality. I hate to sound pessimistic, but it has been my experience that children on the autism spectrum have varying degrees of potential. In fact, a recent meta-analysis published found that amount of therapy (aba, speech, OT, etc. etc.) could not be used as a factor to predict prognosis. Depressing, but true!

ABA is evidence of what.--Please tell me. Evidence that we can train children like dogs--That we can teach memorization skills. The fact is, ABA does not promote dynamic intelligence. In fact, it hinders dynamic intelligence in creating superior static intelligence. Please give me the evidence for a quality of life for those who have received ABA as their treatment.

Just remember that the word evidence means nothing. We have to look at what the evidence is of. If you want your 8 year old child to be on a 12th grade level in math--ABA is for you--but remeber, chances are he is also going to be counting the number of times your ceiling fan rotates everday for the rest of his life.--no job,wife, kids, etc....hey the evidence is there on this.

The evidence is in on ABA--Autism does not go away after treatment and the children do not improve significantly enough to say they have a good quality of life.--

If you are really concerned about these children you need to take a closer look at what you do for a living and what you write for the public to read

I hope you have a change of heart because and if you have done the research you already have a change of mind.

Your right ABA is "evidence-based". In fact, I am glad that you said that. ABA is VERY effective at promoting the development of static intelligence in children and adults on the autism spectrum. However, recent brain research in regards to ASD brains, indicates that the brains of people with ASD are "wired" to develop static intelligence. Therefore, it is no big surprise that so many children on the spectrum respond so well to ABA. Talk about parents wasting money...your asking parents to spend thousands of dollars to implement an intensive ABA program that promotes static intelligence which is not affected by autism. These kids do not need intensive ABA programs in order to learn static intelligence.

Do you have a solid understanding of the pathogenisis of autism? Do you understand that the latest research overwhelmingly supports the theory that children with autism are born with a set of neurological vulnerabilities and that due to these vulnerabilities there is a breakdown in the Intersubjective Relationship which is at the core of all human development across all cultures in every part of the world? If one is unable to engage in the Intersubjective Relationship with his/her caregivers, how can he/she develop normally?

The core deficits of autism are a result of this breakdown in the Intersubjective Relationship. It is the CORE deficits of autism that are leading to the devasting results in terms of quality of life for adolescents and adults with ASD. Have you reviewed the studies available in terms of quality of life for people on the spectrum? If so, did you notice that when they took the percentage of the population with the highest IQ's and analyzed their results separately that they did no better than there peers with lower IQ's in terms of quality of life?

What is the purpose of a treatment program that does not prepare one to attain a quality of life? Dr. Gutstein is an amazing doctor that has devoted his life to developing a remediation program that allows kids on the spectrum to have a "second chance" at developing a "good enough" level of dynamic intellingence to live competently in our very dynamic world. It seems to me that you have the mindset of "nothing but ABA," which is a shame as the "evidence" has shown us that ABA does not help kids on the spectrum to attain a quality of life.

So what if they can tell you their name, the colors of the rainbow, recite their ABC's, etc, if they are not happy and competent. I think we need to think about what our goals are for this population first and then go back and see what programs are "evidence-based".

By the way, RDI has one research study that has been published and another on the way. Dr. Gutstein would love for an outside agency to study the effectiveness RDI. Maybe you can find some good prospects.

I was an ABA therapist and truly believed that it was the best thing for these kids until I learned about RDI. Now, I know that RDI is the best thing for these kids. RDI is changing the lives of so many kids and families affected by this devastating disorder. If you are truly passionate about helping this population, you should get RDI certified.

Mark my words, Dr. Gutstein and his wife Dr. Sheely will earn the Nobel Prize one day for the astounding work that they have done for this population. They are truly remarkable.

"ABA is evidence of what.--Please tell me. Evidence that we can train children like dogs--That we can teach memorization skills. The fact is, ABA does not promote dynamic intelligence."

There are enough people insulting autistic children and the parents who try to help them. The dog training reference is insulting and derogatory.

Your critique of ABA, and your endorsement of RDI, is not supported by reference to any independent peer reviewed journal publications and you ignored the American Academy of Pediatrics information I quoted in my comment.

There are many non evidence based treatments for autism chelation, HBOT, swimming with sharks, Nambudripad's Allergy Elimination Treatment etc. All of these treatments have testimonial support.

But only ABA has well documented, well studied and critiqued, evidence in support of its effectiveness in helping autistic children make sustained gains as described by the American Academy of Pediatrics:

"The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes havebeen significantly better than those of children in control groups.31–40"

And the NY State Department of Health (2005)

"In all four of the studies reviewed, groups that received the intensive behavioral intervention showed significant functional improvements compared to the control groups.

While none of the four studies used random assignment of subjects to groups, there did not appear to be any evidence of important bias in group assignment. Within each study, the groups receiving different interventions had equivalent subject characteristics. Furthermore, all studies showed similar and consistent results.

Since intensive behavioral programs appear to be effective in young children with autism, it is recommended that principles of applied behavior analysis and behavioral intervention strategies be included as an important element of any intervention program."

I just wanted you to know that I--Anonymous #2 am different from the user who posted regarding ABA being similar to dog training. Will you please respond to the points in my post?

Have you reviewed the research available in terms of quality of life for people with ASD who have undergone ABA or "early intervention"?

It should not be surprising or impressive to anyone that ABA produces significant results for kids on the spectrum. ABA promotes the development of static intelligence, which is not affected by autism itself. Please don't ignore these facts simply to support your argument. You are talking about kids lives here.

Autism is the only field where people get angry and personally offended when one develops a new treatment program that is based on more recent and accurate research. ABA is a second generation autism treatment. It was the best we could do with the information that we had. RDI is a third generation program based on the most recent and widely accepted research in the field of autism.

I just spoke at the Pediatric Ground Rounds for my community regarding RDI The Developmental Pediatrician in our area no longer supports ABA and stated that if her child had autism she would pursue RDI. What research have you personally done on RDI? Can you please explain in your own words how an RDI program works?

Anonymous 11:54 pm I am sorry that I addressed my reaction to the dog training remarks to you instead of the other anonymous poster. This is not a current post and then in a short space of time I had successive comments on the same theme. Of course when you post anonymously you risk being mixed up with other anonymous posters.

The topic of my blog comment is that RDI is not an evidence based intervention. I based my comment on the leading reviews of autism interventions and I provided that information in my comment.

You are posting anonymously and you are making unsubstantiated claims for which you provide no reference or authority such as:

"ABA promotes the development of static intelligence"

"RDI is a third generation program based on the most recent and widely accepted research in the field of autism."

A previous poster referenced Gutstein's own RDI evaluation article. No independent studies by other researchers are referenced by that poster or by you. Can you provide reference to any studies by other researchers which assess the effectiveness of RDI as an autism intervention? The opinion evidence of an unidentified Developmental Pediatrican is not evidence.

Ok, feel the need to add my 2 cents as someone who knows a great deal about RDI and has been involved with them in the past. I have rather mixed feelings about it.

My biggest issue with RDI was that I found many of the underlying concepts so incredibly VAGUE! Yes, they all sound great - guided participation, apprentice, coordination, collaboration...but exactly what these things were and how you acheived them were all cloudy to me. At training seminars you'd see many videos of kids doing chores with their parents and much commentary about it - but no real definitions as to what parameters constituted 'how' to do an RDI program. Because it's so vague, I have a hard time decrying or endorsing it because it's hard to define what 'it' is.

Another issue (I will get positive here in a bit,) I have is that the program focuses so much on the parents. Now don't get me wrong, parents should be educated on how to work with their child. But we're talking maybe four months of parent 'education' before you even start child goals, and that is precious time lost.

RDI does not use motivation or behavioral principles. Now, I know there are differing opinions out there on ABA, and I'm not talking ABA. I'm talking, you are told that your child is going to happily engage with you because they really want to deep down, the world is just to confusing for them. If they don't then you must be doing something wrong. Never does the program consider that no, socializing is just not particularly interesting to them.

Last but not least I don't think it's a great idea for any therapy to be controlled by one person. ABA is a group of ideas but no one 'owns' it...RDI is pretty much owned by the Gutsteins and they set all the rules surrounding when and how you can do it, and to some degree how much it will cost you.

Ok, after that long rant, let me say, I think RDI has shed some light on areas that are lacking in behavioral models. I.e., how to effectively teach things like high level language, abstraction, imagination, flexibility, etc. I think some of the goals in RDI are great, but the specifics of how those goals are taught is lacking.

I get a little heated when I see statements that ABA promotes only static intelligence and RDI is the way to promotion of the skills that 'really matter'. And you know what? I'm not even a big ABA person, I'm a middle-of-the-road, do-what-works kind of person. I'm just starting to tire a bit of the RDI rhetoric.

One point I would like to emphasize here...just because the very people who run and market RDI claim that this is 'the way' to dynamic intelligence, this doesn't make it so! I think there are a few good points to be taken from RDI but overall I find it kind of wishy-washy. It involves a lot of day-to-day activities with your child with a big focus on 'declarative' language, i.e., the parent giving opinions and sharing observations vs. giving directions. Don't get me wrong, I think this is fine, but not some miraculous way to build neurological pathways.

Hello, I have read some of the comments and can only say that it is very interesting reading .....

My son has autism and we took part in a pilot project ABA based and it was effective in teaching my son certain skills. It was very time consuming and labour intensive for our family and by the age of 5-6, we had enough of finding trainers, paying trainers, finding supplies and following the program to ensure a high quality.

something was missing in our son's life and we could see that he understood ABC's, colors, could talk, etc...but had so much anxiety and poor understanding of social situations.

We took a chance and moved to RDI, it was a risk and now, 5 years into it....our son has really changed and so has our fear of our son ending up in care, not being able to find a job, or not being able to have friends.

As a parent, I really do not care what anyone else says or writes about ABA or RDI. I just thank god that my son is doing so well. I may not have the evidence to prove what has happened, but it is a miracle (albeit we have to learn and work with our son, but in a more natural and life changing way)

So, discuss as you will, people who do ABA will fight to be heard and people who do RDI will argue their position.

We all can make choices and it is much harder when people who want to see children get better are not working together.

"Little 'ole mom"... I laude your work with your son and your desire to do whatever works to help him. I myself have often bemoaned the fact that various therapy gurus often create drama worthy of a reality show. I have been to RDI, Floortime, VB and ABA workshops and sometimes the vitriol these gurus openly spew at each other is alarming.

That said, there is a difference between an individual therapist refusing to work with you if you are doing something they don't "approve"; and people having an open and honest debate about the efficacy of therapies. As a therapist, if I don't like another therapy that a family is doing I'm certainly not going to stop them. I will not, however, give any therapy a 'free pass' on well deserved criticism in the name of working together.

This is an interesting discussion. I am an RDI consultant and the parent of a child with ASD who has been through an RDI program. My son formerly had a few years of ABA (verbal behavior based) at school. The ABA built his language quite and bit and gave him some academic skills such as the ability to categorize, match, rote count, etc. Valulable skills, to be sure. However, he grew more behaviorally rigid as the program continued. Perhaps this was because he had "bad ABA." Most of the intervention was in the form of discrete trials delivered by a paraprofessional. The few times I observed, I indeed felt like it was dog training-like, sorry to say and not meant to offend anyone - that was just the feeling that it left me with. In addition, the speech the my son developed was pretty much all scripted. Agressive and self-injurous behaviors became a problem in his second year of the program. He would come home and script his ABA programs and demand that I would repeat verbatim the answers he had been required to give. One time early in the program he came home from school scripting his "do this" program. I clearly remember him sitting on the stairs staring vacantly at nothing and saying over and over "do this" and raising his arms in the air. I was so concerned that I called his teacher, who told me not to worry, it was "normal." At any rate, we had the school discontinue the discrete trials and we started RDI when he was five. It was slow going but we saw gradual progress. The areas in which he progressed were areas that were not addressed in the ABA program at school - social communication (such as commenting and responding to comments), social referencing, perspective taking, empathy, and flexible thinking. Now, at age ten, he still has processing speed issues and a bit of rigidity, but there has been a definite improvement. Before we started RDI, after two years of school ABA, he had an ADOS score in the severe category, now he is in the "mild" category. Now, I don't mean to knock ABA. It does work for some people. And, yes, there are plenty of studies showing that it teaches skills and shapes behavior. So that is a good thing. But, as others have said, there is limited data on long term outcomes of persons who have had ABA. Now, about the vagueness of RDI from one poster. I agree that the concepts can be vague. That is why people need to use certified consultants. The consultants take what could be vague and make it concrete, and help you apply it to your own situation. Regarding the parent objectives, I believe the Gutsteins found that the parent objectives were needed in order for the program to not become behavioral and task oriented. In the parent objectives, theory is taught, family dynamics issues are explored to make sure there are no obstacles to remediation from that perspective, and parents are taught how to properly guide their child - including the concepts of guiding communication style, coregulation, parent emotional regulation, etc. Parents are such a key element because the program is centered on dynamic systems theory and the parent as the central force in the child's remediation. Regarding the evidence basis for RDI, at this point there are rulings stating that there is longitudinal evidence from thousands of families that the program is effective - the program is objective and data-driven and there are thousands of single case studies with clear documentation (all RDI families working with consultants are on the RDI Learning System) of children mastering cognitive developmental objectives. This includes the families I am working with. On all RDI families, we are required to take baseline video tape data before the child starts the program and maintain ongoing video tape evidence of progress and of mastery as we move through the cognitive developmental objectives.

This is an interesting discussion. I am an RDI consultant and the parent of a child with ASD who has been through an RDI program. My son formerly had a few years of ABA (verbal behavior based) at school. The ABA built his language quite and bit and gave him some academic skills such as the ability to categorize, match, rote count, etc. Valulable skills, to be sure. However, he grew more behaviorally rigid as the program continued. Perhaps this was because he had "bad ABA." Most of the intervention was in the form of discrete trials delivered by a paraprofessional. The few times I observed, I indeed felt like it was dog training-like, sorry to say and not meant to offend anyone - that was just the feeling that it left me with. In addition, the speech the my son developed was pretty much all scripted. Agressive and self-injurous behaviors became a problem in his second year of the program. He would come home and script his ABA programs and demand that I would repeat verbatim the answers he had been required to give. One time early in the program he came home from school scripting his "do this" program. I clearly remember him sitting on the stairs staring vacantly at nothing and saying over and over "do this" and raising his arms in the air. I was so concerned that I called his teacher, who told me not to worry, it was "normal." At any rate, we had the school discontinue the discrete trials and we started RDI when he was five. It was slow going but we saw gradual progress. The areas in which he progressed were areas that were not addressed in the ABA program at school - social communication (such as commenting and responding to comments), social referencing, perspective taking, empathy, and flexible thinking. Now, at age ten, he still has processing speed issues and a bit of rigidity, but there has been a definite improvement. Before we started RDI, after two years of school ABA, he had an ADOS score in the severe category, now he is in the "mild" category. Now, I don't mean to knock ABA. It does work for some people. And, yes, there are plenty of studies showing that it teaches skills and shapes behavior. So that is a good thing. But, as others have said, there is limited data on long term outcomes of persons who have had ABA. Now, about the vagueness of RDI from one poster. I agree that the concepts can be vague. That is why people need to use certified consultants. The consultants take what could be vague and make it concrete, and help you apply it to your own situation. Regarding the parent objectives, I believe the Gutsteins found that the parent objectives were needed in order for the program to not become behavioral and task oriented. In the parent objectives, theory is taught, family dynamics issues are explored to make sure there are no obstacles to remediation from that perspective, and parents are taught how to properly guide their child - including the concepts of guiding communication style, coregulation, parent emotional regulation, etc. Parents are such a key element because the program is centered on dynamic systems theory and the parent as the central force in the child's remediation. Regarding the evidence basis for RDI, at this point there are rulings stating that there is longitudinal evidence from thousands of families that the program is effective - the program is objective and data-driven and there are thousands of single case studies with clear documentation (all RDI families working with consultants are on the RDI Learning System) of children mastering cognitive developmental objectives. This includes the families I am working with. On all RDI families, we are required to take baseline video tape data before the child starts the program and maintain ongoing video tape evidence of progress and of mastery as we move through the cognitive developmental objectives.

Laura - I was the poster who said I found many concepts in RDI vague. Interested to check back after so many months and see a response! I'm glad you've found RDI to be so helpful, but personally this is what I still question in terms of it being too vague:

- Where is the standardization in RDI? It appears that one consultant's 'take' on the concepts can be wildly different from another consultant's, with no unifying standards.

- Are there any real assessment tools in RDI? I'm not talking about rigid tests, but even something like a skills checklist followed by how often the child demonstrates the skill and in what environments, etc.? Videos are great but they represent a snapshot in time that may or may not be representative of the big picture. If a child demonstrates a skill with 30% accuracy and I tape the 3 out of 10 times they 'get it', then my video log will show success when in fact the skill is shaky at best.

- Where are the definitions for RDI terms such as guided participation, apprenticeship, etc.? While I'm not 100% behind ABA either, I know for a fact that I can at least look up a very solid definition for stimulus, positive reinforcement, function of behavior, etc., etc. In RDI I can't seem to nail down actual, well-defined and measurable definitions for all of the things they promote. Again, only my experience, but things like 'guided participation' seem to take on a sort of elusive, new-agey quality - much talked about but ill-defined.

You know, I do think that RDI has a lot to offer, potentially. Honestly, though, I don't like the way many parts of the program are presented. For me, at least, the program needs to be organized and defined differently.

I am a former RDI Consultant. In the begining, the proram was an excellent means of attempting to correct some of the "core deficits" of autism. I saw some amazing results with the children, especially when the family was committed. After Dr. Gutstein created his on line RDIos community - everything changed. The over 2000 objectives were impossible to understand and trranslate (I an a psychologist with 30 years experience). I coulud see that the issue was more of making moneu for the Connections Center and total control. I found myself working morre and more for the Gutsteins and not understanding what the big picture was. The families I had dropped out by the scores - they couldn't understand the "objectives" (that were invented by Dr. G)and the couldn't stand paying the $50 subscription fee for something that was totally confusing. I finally threw in the towel. I feel the Gutstein's wrecked a pretty good program. Dr. G has a very big ego and you are also bumping up againg "god."

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Why ABA For Autism?

The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–4American Academy of Pediatrics, Management of Children with Autism Spectrum Disorders

"We have to look also at environmental factors, and from my point of view, the interaction between the genetic factors and the environmental factors ... It looks like some shared environmental factors play a role in autism, and the study really points toward factors that are early in life that affect the development of the child"
Joachim Hallmayer, MD, associate professor of psychiatry at Stanford University in California

Even Out Environmental and Genetic Autism Research Funding

Right now, about 10 to 20 times more research dollars are spent on studies of the genetic causes of autism than on environmental ones.

We need to even out the funding.

Irva Hertz-Picciotto, UC Davis M.I.N.D. Institute Researcher

My Autism Pledge For Conor

Today I pledge to continue;I Pledge to continue to fight for the availability of effective autism treatments;I Pledge to continue to fight for a real education for autistic children;I Pledge to continue to fight for decent residential care for autistic adults;I Pledge to continue to fight for a cure for autism;I Pledge to continue finding joy in my son but not in the autism disorder that restricts his life;Today, and every day, I Pledge to continue to hope for a better life for Conor and others with autism, through accommodation, care, respect, treatment, and some day, a cure;Today, and every day, I Pledge to continue to fight for the best possible life for Conor, my son with autistic disorder.

Dr. Jon Poling : Blinders Won’t Reduce Autism

"Fortunately, the ‘better diagnosis’ myth has been soundly debunked. ... only a smaller percentage of this staggering rise can be explained by means other than a true increase.

Because purely genetic diseases do not rise precipitously, the corollary to a true autism increase is clear — genes only load the gun and it is the environment that pulls the trigger. Autism is best redefined as an environmental disease with genetic susceptibilities."

We should be investing our research dollars into discovering environmental factors that we can change, not more poorly targeted genetic studies that offer no hope of early intervention. Pesticides, mercury, aluminum, several drugs, dietary factors, infectious agents and yes — vaccines — are all in the research agenda.

Conor

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It's NOT About ME

I am the father of two sons one of whom is severely autistic with intellectual disability. I have advocated for autism services for autistic children, students and adults in New Brunswick, Canada and I blog and comment about autism on the world wide web. And I like to walk .. a lot.